“Curing” Down Syndrome?

Last updated on: April 26, 2012 at 7:40 pm by Amy Julia Becker

“Curing” Down Syndrome? 2012-04-26T19:40:39-04:00 Amy Julia Becker

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I found out last week that my friend Ellen Painter Dollar and I won an award from the EPA (Evangelical Press Association) for our point-counterpoint essays about disability published for Christianity Today online. My article was called, “Considering ‘Curing’ Down Syndrome With Caution,” and my argument focused around two points. One, the language of “cure” is erroneous. Down syndrome is not a disease, and the presence of an extra 21st chromosome impacts individuals with Down syndrome both mentally and physically. I wrote:

This language demonstrates more than ignorance of biology. It reduces Down syndrome to a medical condition rather than understanding people with Down syndrome as whole—emotional, physical, social, spiritual—persons. It further reveals assumptions that Down syndrome can be conflated with mental retardation, and assumptions that a cognitive delay is a disease that needs curing. Finally, it assumes that drugs are the best way to address cognitive delays, whereas other research demonstrates that children with Down syndrome have been socially conditioned to meet low expectations for their ability to learn.

I also wrote about the Christian tendency to conflate difference with sin:

All that is broken in this world is broken as a result of sin. And sin is that which separates us from God, primarily, and then from one another, from creation, and from ourselves. When my husband and I need to make decisions about medical interventions for Penny, we try to think about it in these terms. For instance, she has always tested positive for a mild hearing loss. A mild hearing loss potentially separates her from other people. So we have chosen, twice, to put tubes in her ears. Or, to cite a more profound example, I have a friend with a daughter on the autism spectrum. He once described feeling as though his daughter sometimes “lost” herself, as a result of the autism. Separation loomed between father and daughter, and even, it seemed to him, within her own being. It is these places of separation where we must turn to Jesus as healer, and where we must turn to Jesus as healer in a holistic sense, as healer of body, mind, spirit, and community.

And I concluded, “People with Down syndrome don’t need to be cured. They do need to be treated as the complete human beings they are.”

Ellen responded with a different perspective: “I Want to Be Accepted as I Am, But I’ll Take a Cure Too.” She wrote:

As someone who embraces the fallen-world narrative in explaining my own genetic disorder, I was caught up short by Becker’s dismissal of that narrative as explanation for illness and disability. When she used the term “broken,” of course, she was referring to spiritual brokenness. But as someone with osteogenesis imperfecta (OI), also known as brittle bone disease, I can’t help hearing it literally as well. I am more broken than other people. My body does not function as it should. Bones support our bodies’ most essential functions. The reason that babies with the most severe type of OI die soon after birth is that their rib cages cannot support respiration. Bones are designed to break only under extreme stress—a skiing accident, a fall from a tree, a car crash. When I was about four, I sat down on the bathroom floor to talk to my grandmother as she was brushing her hair, and my femur (thigh bone) broke. This is not how it is supposed to be. My body and my bones are deficient. And I wish they weren’t, even though I understand that my bones and my identity are so intertwined in ways good and bad that “me” without OI would be a very different “me.”

Ellen and I agree in many ways, and we also recognize the difference between disabilities that impact people physically and those that cause mental differences.

What do you think? Is disability a result of the fall, an intentional part of God’s creation, or something else?

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